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加纳宗教观点与镰状细胞病研究及相关公共卫生干预措施观点之间的关系

Relation Between Religious Perspectives and Views on Sickle Cell Disease Research and Associated Public Health Interventions in Ghana.

作者信息

Dennis-Antwi Jemima A, Ohene-Frempong Kwaku, Anie Kofi A, Dzikunu Helen, Agyare Veronica A, Boadu Richard Okyere, Antwi Joseph Sarfo, Asafo Mabel K, Anim-Boamah Oboshie, Asubonteng Augustine K, Agyei Solomon, Wonkam Ambroise, Treadwell Marsha J

机构信息

Ghana College of Nurses and Midwives, Accra, Ghana.

Sickle Cell Foundation of Ghana, Accra, Ghana.

出版信息

J Genet Couns. 2018 Sep 1. doi: 10.1007/s10897-018-0296-7.

Abstract

Sickle cell disease (SCD) is highly prevalent in Africa with a significant public health burden for under-resourced countries. We employed qualitative research methods to understand the ethical, legal, and social implications of conducting genomic research in SCD under the Human Heredity and Health in Africa (H3Africa) initiative. The present study focused on religious and cultural aspects of SCD with the view to identifying beliefs and attitudes relevant to public health interventions in Ghana. Thematic analyses from individual and group interviews revealed six key areas of importance, namely, reliance on a supreme being; religion as a disruptive influence on health behaviors; role of religious leaders in information sharing and decision-making; social, religious, and customary norms; health and religious/supernatural beliefs; and need for social education and support through church and community. Findings suggest that public health programs in Ghana should not only aim at increasing knowledge and awareness about SCD and its management but also create an understanding of the relevance of genomics and alternative technological advancement to diagnosis and ethical decision-making around available options for health seeking. Future research should engage communities to help address the ethical and social implications of a persuasive religious influence on SCD-related health decisions.

摘要

镰状细胞病(SCD)在非洲高度流行,给资源匮乏的国家带来了巨大的公共卫生负担。我们采用定性研究方法,以了解在“非洲人类遗传与健康”(H3Africa)倡议下开展SCD基因组研究的伦理、法律和社会影响。本研究聚焦于SCD的宗教和文化层面,旨在识别与加纳公共卫生干预相关的信仰和态度。对个人及小组访谈的主题分析揭示了六个关键重要领域,即对至高无上存在的依赖;宗教对健康行为的干扰性影响;宗教领袖在信息共享和决策中的作用;社会、宗教和习俗规范;健康与宗教/超自然信仰;以及通过教会和社区进行社会教育和支持的必要性。研究结果表明,加纳的公共卫生项目不仅应旨在提高对SCD及其管理的知识和认识,还应增进对基因组学及其他技术进步与诊断以及围绕寻求健康的现有选择进行伦理决策的相关性的理解。未来的研究应让社区参与,以帮助解决有说服力的宗教影响对SCD相关健康决策的伦理和社会影响。

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